Factors influencing pre-exposure prophylaxis uptake among current users: A qualitative study

Abstract

Daily oral pre-exposure prophylaxis is an effective strategy for HIV prevention; yet, uptake has been lower than anticipated. This study explores the factors that influenced current users’ decisions to initiate PrEP in Western New York. Qualitative data from 41 semi-structured interviews were thematically analyzed. Participants’ decision to initiate PrEP was based on individual, interpersonal and structural factors. PrEP users initiated when there was an increase in knowledge, risk perception, sexual health communication, and PrEP access. Findings suggest for PrEP to maximize its HIV prevention potential, public health interventions that utilize a multi-level approach may be most impactful to increase uptake.

INTRODUCTION

Significant advancements have been achieved in HIV prevention over the last three decades. The United States has experienced an overall decrease in HIV incidence. Between 2014 and 2018, both the rate of diagnoses and the annual number of new infections have declined (Centers for Disease Control and Prevention, 2020)Despite the advancements in HIV prevention, in New York State (NYS), there were 2,481 new HIV diagnoses in 2018 (New York State Department of Health AIDS Institute [NYSDOH], 2019). To end the AIDS epidemic, NYS proposed a three-point plan to achieve the first-ever decrease in HIV prevalence by the end of 2020. A component of this plan is to facilitate access to pre-exposure prophylaxis (PrEP) for high-risk individuals. While PrEP is federally approved and an effective biomedical intervention for HIV prevention, uptake has not yet met expectations (Siegler et al., 2018). For PrEP to make an impact in NYS, a target of 65,000 individuals filling PrEP prescriptions by the end of 2020 has been set; however, recent data indicates only 32,000 people have achieved this goal by the end of 2018, demonstrating a substantial challenge to meet this target (NYSDOH, 2019).

The complexity of PrEP uptake is documented in studies with emphasis often placed on barriers, facilitators, intentions, and willingness among potential users (Parsons et al., 2017; Rael et al., 2018; Golub, Fikslin, Goldberg, Pena, & Radix, 2019). Findings from these studies reveal cost, perceived HIV risk and side effects are associated with the decision to initiate PrEP. Furthermore, the decision to start PrEP is often multifaceted, and willingness to take the medication is not a definitive indicator of PrEP initiation (Parsons et al., 2017). As demonstrated by Golub and colleagues (2019), PrEP uptake among patients recruited from a community health center in New York City was impacted by both objective and subjective HIV risk assessment as well as medication beliefs and self-efficacy. While this study provided insights into individual-level factors influencing PrEP uptake, it eliminated the structural and financial barriers that exist in the real world by freely offering PrEP to patients.

Findings from previous studies have led to the recognition of the need to understand the motivations underlying PrEP utilization, which may be beneficial where access is promoted, however, utilization remains low among those disproportionately affected by HIV. In this study, we seek to address this gap by exploring current users’ decisions to initiate PrEP. Understanding the process and factors related to PrEP initiation will provide critical insight on how to improve uptake among eligible candidates and help identify salient areas for targeted interventions.

MATERIALS AND METHODS

Participants

The study utilizes qualitative data from a larger project conducted between February-May 2018 that explored patient perspectives on PrEP. Participants were recruited with passive and active strategies at community clinics. A total of 68 potential participants completed an eligibility screening questionnaire (age ≥18 years, >30 days of PrEP use, and comfortable reading and speaking English), resulting in 56 eligible individuals. The university’s Institutional Review Board approved the study with a waiver for written informed consent.

Data Collection

Semi-structured in-depth interviews (n=41) were conducted by research team members trained in qualitative methods. Interview domains focused on PrEP knowledge, factors associated with uptake, adherence, and attitudes towards use. This analysis focused on participants’ responses to the factors that influenced their decision to initiate PrEP. Interviews lasted approximately 60 minutes, were audio-recorded and transcribed verbatim. Each participant received a $50 gift card.

Data analysis

An inductive approach guided by Braun and Clarke’s six-phase guide was used for data analysis (Braun & Clarke, 2006). First, two research team members independently coded five randomly assigned transcripts. Line-by-line coding was conducted, and discrepancies were addressed to create a preliminary codebook. Second, five additional transcripts were independently coded by two team members. In step three, co-authors discussed and refined the codebook and crafted domains providing a basis for the thematic analysis. The remaining transcripts were then independently coded. Co-authors discussed, merged, and modified codes. The fifth phase resulted in a codebook organized in Microsoft Excel containing code definitions and illustrative quotes. In the final phase, team members narrowed broader domains into specific themes.

RESULTS

There was a total of 41 participants, ranging in age from 20 to 50. Participants were 90% male, 95% non-Hispanic white, and 75% identified as gay or homosexual. Educational attainment was relatively high; 70% of the participants had a college degree or higher. In addition, 68% had been on PrEP for 12 months or less (Table 1). We organized emerging themes into three categories: individual, interpersonal, and structural factors that influenced participants’ decisions to initiate PrEP. Representative quotes aid in illustrating themes and sub-themes.

Table 1.

Demographic characteristics of participants (N=41)

Characteristics	n	M (SD) or (%)
Mean Age		33.1 (11)
Sex
Male	37	90.0
Female	3	7.3
Transgender	1	2.5
Sexual Orientation
Straight or Heterosexual	3	7.3
Gay or Homosexual	31	75.6
Bisexual	3	7.3
Other (Queer)	4	9.8
Self-reported Race/Ethnicity
White/Hispanic	2	4.9
White/Non-Hispanic	30	73.2
Asian	2	4.9
Black/African American	5	12.1
Multi-Racial	2	4.9
Educational Attainment
GED or Some High School	5	12.3
Some College	7	17.1
College degree, Postgraduate or Professional Degree	29	70.6
Income
< $40,000	20	48.8
$40,000 - $80,000	11	26.9
>$80,000	10	24.3
Health Insurance Status
Public (e.g., Medicaid)	11	26.8
Private (e.g., employer-provided)	29	70.7
Length of time on PrEP
<12 months	28	68.3
>12 months	13	31.7

Note. PrEP – pre-exposure prophylaxis

Individual Factors

Gathering information

Many participants expressed the need to independently gather information to help them make an informed decision about initiating PrEP while others described a self-directed thought process where they continually evaluated the relative advantages and disadvantages of PrEP. Participants gathered information about the medication’s specific purpose, function, and efficacy using online sources. For many participants, the motivation to gain information was an impactful factor in the decision-making process:

“I was a little skeptical at first because [PrEP] sounds almost too good to be true. But when I did my own research, I was like, this is something I’d like to do.”

Protection and prevention

Many participants expressed that the decision to initiate PrEP was a way of taking control of one’s health. They wanted to protect themselves from contracting HIV, and PrEP provided an approach that differed from other behavioral prevention strategies:

“I kind of took it just as a preventative, just in case. I thought of it as, like when a female takes birth control. She takes it just in case she doesn’t want to get pregnant so I took it just in case because I don’t want to contract HIV.”

Some stated that being diagnosed with a sexually transmitted infection increased their perceived risk for acquiring HIV, which served as a trigger to initiate PrEP:

“I had two STDs in the year prior and was like, you’re really putting yourself at risk, like it was more of a concern for my own health.”

Also, participants noted that the concern of acquiring HIV served as a key motivation. This fear was commonly derived from three sources: prior potential exposure to HIV, having lost friends or family to HIV and hearing stories about people’s experiences with HIV before the advent of antiretroviral therapy. “Well, it’s always been a really big fear of mine, having HIV and AIDS, because my mom has had friends die from it. That’s what made me want to do it [initiate PrEP]. Because I didn’t want HIV.”

Participants also shared uncertainty about partners’ honesty in disclosure of HIV status as well as concerns of partner fidelity as triggers to begin PrEP: “So I started using PrEP because I was just sitting around and I was like wow, [name redacted] you got cheated on twice this past year. And I wasn’t using protection because I thought these relationships were just one on one, and so like one on one monogamous relationship.”

Sexual risk behavior

Participants recognized they met eligibility guidelines for PrEP based on their behaviors. Some mentioned they had multiple sex partners or engaged in condomless sex; these actions weighed into their decision-making process to initiate PrEP:

“I was thinking that if I’m going to be having more than one sexual partner and I don’t like to use condoms and that is really risky, I need to do something about that.”

Interpersonal Factors

Peer and family communication

Many participants indicated they first heard about PrEP and how to access the medication from conversations with their family, friends, or sexual partners. For some, these discussions were initial points of awareness about PrEP. Many reported their peers actively encouraged PrEP uptake and motivated their decision to begin treatment:

“I first heard about it [PrEP] from a friend who took it. He told me about it and told me how to get signed up for it, where to go, how the copays worked and all that.”

Conversations about PrEP initiation with family members often occurred among young adults and included topics such as approval to initiate PrEP, protection from HIV, and concerns about participants’ anticipated behaviors after PrEP initiation:

“I had talked to my parents about it. I talked to my mom at least about it. She expressed concern that I was just going to go[have sex], and she’s like, “It’s not a free pass to go and have sex with people.”

Patient-provider communication

Participants discussed the value of healthcare provider engagement in conversations about sexual health in a respectful, non-judgmental manner: “It was a good conversation. It was informative and I am very comfortable with health providers. I mean it’s a medical provider/patient kind of relationship but it’s a close form of that relationship so when she mentioned it [PrEP], I was happy that she wanted to provide me with information about it. I was comfortable. I was confident in her knowledge about it and her telling me that it’s available to you.”

Through these purposeful conversations, participants realized they met eligibility guidelines for PrEP and received provider support and encouragement to initiate PrEP. Endorsement from clinicians was a key motivator to their decision:

“They [doctors and nurses] questioned my sexual activity, you know how sexually active I was and they went through the rest and discussed the risks that I take or had been taking. And they said I was a good candidate to be on it.”

Structural Factors

Availability and accessibility

Participants commonly stated their decision to initiate PrEP was based on availability. Many described the importance of studies demonstrating PrEP safety and efficacy as well as federal approval, which confirmed to them that the healthcare community acknowledged the endorsement of its use. Participants also talked about the importance of PrEP accessibility in their communities. Many described the ease of obtaining the medication due to its convenient access and straightforward initiation process. Participants described a simple course of action to start PrEP, including calling a doctor’s office to set up medical appointments as well as the clinic’s flexible hours (e.g., weekends) as a key influence on PrEP initiation:

“I specifically went and called a clinic to go and be put on PrEP… They kind of specialize, and they’re the first one that brought [PrEP] to the Western New York area. So I called them. I inquired of them. I went to them… and here I am.”

Affordability

The cost was a key consideration for participants. Most had private health insurance and were able to obtain PrEP for no or low cost. On the other hand, some participants shared they were either uninsured or underinsured yet were able to afford PrEP through programs such as the PrEP Patient Assistance Program via the state health department, Gilead co-pay program, or other funding sources: “Just having access to it, it is available and affordable.”

DISCUSSION

Given the State of New York’s recommendation to facilitate access to PrEP for high-risk individuals, our findings provide useful information about PrEP initiation in Western New York. This study is among the first to qualitatively explore the multilevel dynamics that enhance PrEP initiation among actual users in this region. Perceived risk and motivation to protect ones health was a key factor in PrEP uptake decisions. Participants realized a personal benefit in initiating treatment once they acknowledged their risk for HIV acquisition. This idea aligns with previous studies that examined PrEP uptake among those at risk for HIV (Golub et al., 2019; Qu et al., 2019). Thus, strategies to increase risk perception among PrEP eligible populations are crucial to increase PrEP uptake.

Before deciding to initiate, participants gathered PrEP-related information to enhance their knowledge about the medication. While the timing to initiate PrEP varied across participants, it was common for the decision-making process to begin with collecting information about the overall efficacy, tolerability, and safety of the medication. Similarly, Ojikutu et al. (2018) found PrEP knowledge was associated with willingness to use PrEP among high-risk Black/African Americans; yet, PrEP knowledge alone did not influence uptake. Instead, PrEP knowledge serves as a facilitator within the decision-making process for potential users considering the initiation of the medication. Several participants described intrinsic motivation to remain in control of their health status. Often, participants recognized that their sexual behaviors increased their HIV risk and subsequently served as a cue to take preventive action in favor of their health. This suggests PrEP implementation on the individual level requires both PrEP-related knowledge and personal motivation to remain healthy and protected from HIV. Throughout the decision-making process to initiate PrEP, participants engaged in conversations with people whom they trusted which helped participants assess whether PrEP was an appropriate choice, a finding that aligns with previous studies (Chen et al., 2019; St. Vil, Przybyla, & LaValley, 2019). These discussions were referred to as helpful and supportive by participants, a finding which dispels concerns often cited among non-PrEP users in other studies who perceived discussions with others as a barrier to PrEP uptake for reasons related to false judgments about participants’ HIV status and medical mistrust (Santa Maria, et al. 2019; Rael et al., 2018). Our findings suggest conversations with peers and family members were worthwhile for participants because they took this limited knowledge about PrEP availability to discuss further with their healthcare providers.

Patient-provider communication was a critical factor in PrEP initiation among participants. Calabrese et al. (2017) proposed all adult patients seeking routine preventive healthcare be screened for PrEP candidacy to capture eligible patients and reduce the onus placed on patients to initiate conversations about PrEP with providers. Findings suggest interventions based on interpersonal communication between this dyad would benefit from developing innovative strategies such as a collaborative shared decision-making approach to normalize conversations about PrEP use as a way of increasing uptake (Wilson et al., 2020). A unique finding in our study is the role of parent-adolescent/young adult sexual health communication in facilitating PrEP uptake. Research demonstrates that sexual communication between parents and their children increases the adoption of safer sexual behaviors (Rogers, 2017). Young adult participants in our study had parents who were willing to discuss and support PrEP, thus eliminating a potential barrier to uptake. This finding is critical in light of the federal approval of PrEP in 2018 for individuals under 35 kilograms in weight, effectively capturing adolescents under age 18 (American Foundation for AIDS Research [AmfAR], 2019). Adolescents’ and young adults’ access to PrEP is dependent upon several external factors, including parental consent and involvement, confidentiality, and securing payment, which are possible obstacles to uptake (AmfAR, 2019). Although in NYS, adolescents under 18 can obtain PrEP without parental consent, in some states, this is not the case. Under the United States’ Affordable Care Act (ACA) individuals younger than age 26 can remain on their parent’s insurance but any service utilized will be billed; consequently, allowing parents access to information regarding prescribed medications used by their children (Centers for Medicare & Medicaid Services, 2019). These issues, coupled with the inability to discuss sexual health matters with parents or seek parental support, could create a barrier to prevention efforts.

PrEP uptake in this sample was, in part, achieved due to its accessibility and availability in Western New York healthcare facilities. Several participants became interested in using PrEP once they learned it existed and was readily available in the community. Findings indicate that convenient appointment scheduling with a provider to discuss PrEP was critical to uptake. Increasing PrEP uptake may require the training of non-clinician staff (e.g., PrEP navigators) at healthcare facilities to manage PrEP patients efficiently (Bleasdale et al., 2020). A facilitating factor for PrEP uptake found in this study was adequate financial resources such as co-pay assistance. The process to initiate PrEP was less burdensome once participants received financial assistance to afford the medication and any healthcare-related services (e.g., routine laboratory testing). Golub and Myers (2019) assert that activities grounded in PrEP implementation critically depends on PrEP medication cost reductions to improve access for those who may have limited financial resources, a recommendation in line with our findings.

There are a few limitations to our study. First, participants were recruited from one specific region; therefore, our findings may not be transferable to other communities. Also, a convenience sampling strategy was utilized to identify and recruit participants which may limit the representativeness of our results. The sample was comprised primarily of white males with high educational attainment; thus, the external validity of our findings may not represent the experiences of individuals from other diverse groups. Future studies may consider an exploration of PrEP decision-making from a more diverse sample of PrEP users with respect to income, race, ethnicity, sex, and educational attainment to identify other key contextual factors at the individual, interpersonal, and structural levels which may impact PrEP uptake. Given the qualitative design of this study, we were not able to assess the temporal order of factors that influenced PrEP initiation. Notwithstanding these limitations, the study provides critical insights into the factors that influence individuals to initiate PrEP and also demonstrates the importance of family/friend discussions in the context of PrEP uptake for young adults, a key under-explored area of research.

Conclusions

Study findings indicate that adequate knowledge, accurate HIV risk assessment, interpersonal communication between friends, family, and healthcare providers, as well as access to and affordability of PrEP influenced the decision to initiate. Given the low utilization of PrEP on a broad level, understanding the motivations by current users to begin PrEP is fundamental for future rollout strategies. This study illuminates the multilevel facilitators of PrEP initiation to extend the evidence for innovative efforts that aim to increase uptake among potential candidates. Findings can serve as a resource for practitioners in understanding the reasons why patients may initiate PrEP, as well as insights on how to better identify PrEP candidates. This understanding is critical in achieving state and national health goals to end the HIV epidemic by 2020.